[bct] Re: Lynette and Maria.

  • From: "Dana Niswonger" <dniswonger@xxxxxxxxxxxxxxx>
  • To: <blindcooltech@xxxxxxxxxxxxx>
  • Date: Thu, 17 Nov 2005 04:22:11 -0600

Hi Jeff:
Wow, great post man! I can really identify with the situations described in your narrative. Been there, done all that too! Please download my lifecast when Larry gets it put up on the site. Man, you'll love it! Thanks for sharing so honestly. It is only when we share our short comings and mistakes, just like our successes that we all learn how too, as well as how to learn. Did I say, really great post man!
Dana


----- Original Message ----- From: "jeff" <j1armstrong@xxxxxxxxxxxxxx>
To: "blind cool tech mail list" <blindcooltech@xxxxxxxxxxxxx>
Sent: Wednesday, November 16, 2005 11:35 PM
Subject: [bct] Lynette and Maria.



Hi Lynette and everyone,

I really wanted to thank you for the letter you read or had read on your cast. I was working at my vending business and having a shi$$y day because someone left me a rather rude message and some other crap. When I listened to your words, I felt like someone else knew exactly what I have gone through. Your experiences with surgery and vision loss and all the anxiety and changes it brings gave me a feeling of comfort and I realized that the things bothering me today were very minor. I've since solved the issues in my own creative way and feel fine. If I might, let me tell a little bit about my experiences in the vision loss arena.

I grew up with the knowledge that I was losing my vision. They told me that eventually I would probably lose all of it but I secretly didn't believe them. In my young mind, I simply wouldn't let it happen. My eye condition is, to this day, not been determined. I have always been "far-sighted" and could see about 20/100 or better when I was of pre-school age. Shortly after starting elementary school I began having hemorrhages in my retinas. The doctors explained to me that my eyes would continue to produce blood vessels until they had branched out so far and become so fragile that they just broke off. Then the eye would fill with blood and my world would become the color of cherry Kool-aid. After a couple of weeks, this would clear and go away but I would see new floaters. Over time I noticed my peripheral vision going away. That process continued until my mid 20s, when, for some unknown reason, most likely the end of my growing portion of life, it stopped. By this time I had about 20/400 vision in both eyes. I was elated that this process had finally stopped, until a couple of years later when I found out that the next phase had begun. Again, I don't know why it started but I began developing cataracts in both eyes. I wanted them removed but the doctors said that I needed to wait. They said that the surgery carried a risk of blindness and so wouldn't operate until it got so bad that I had nothing to lose. Well, in the meantime, all the years of scar tissue on my retinas had taken another toll, the scar tissue blocks oxygen supply to the rest of the retina and thus the retina continued to deteriorate. By the time they did the left eye cataract surgery, there wasn't much vision left, or should I say, there wasn't much retina left. Well, that was the left eye. What about the right eye. Well, I did get some visual ability back from the left eye surgery so I figured the right one would double my ability to see. By this time, the cataract had taken all the vision in the right eye. A sonogram of the right eye left the doctors with the opinion that no more retina was usable below the cataract and they decided not to bother with the surgery. At that point, I was clinging to my left eye's improvements but I developed epithelial cell growth on the back of the lens. Several laser treatments later I could see a bit more clearly but it came back again. Well, that is what I thought. In fact, it was a development in the vitreous. A vitrectomy was planned to remove the vitreous gel and hopefully restore some vision. This surgery makes my cataract surgery seem like a manicure appointment by comparison. They removed the vitreous and ended up pulling the retina away from the back of the eye which started some bleeding. They woke me in the middle of the surgery to tell me that this had happened and that they need to use the laser and some freezing process or something, I'm not exactly sure, I was on drugs, Man! They did, however install the infamous bubble. The bubble of air or some other gas which meant that I needed to camp out, face down, for 3 weeks. I lived on the living room floor during this time, on a mattress from our pull-out couch-bed. I would later find out that something in the surgery had pulled my lens implant off-center so now, what light I can see comes both, through, and around, the lens. I now have the doubled vision I wanted, only, it's in one eye. I also have nistagnus, the condition where your eyes shake back and forth constantly. I know a lot of people with this problem. They tell me that their world does not shake back and forth with this movement but mine does. Sometimes, I reach for things and they aren't actually there, the thing is over there, nope, not there, there it is. Well, so my left eye has double vision and it shakes back and forth all the time so whatever I can make out shakes back and forth too. Most days, I battle the desire to cover my eye and just stop using it. Sometimes, I feel like the world is as messed up as my view of it. I don't want to be a quitter but it's tempting to cover up my eye and stop looking at the visual earthquake.

That is the physical history, but there is a psychological history as well. I did go to a special classroom which was meant for visually impaired kids and things in that classroom were great. I found schoolwork to be easy, I carried mostly As and a few Bs. I liked learning and school, until I left the safety of the classroom. Outside that special room where I was just another kid, just like the others in the room, I was a freak. Once I left the classroom, I was on lookout duty. Try to be quiet, try not to be noticed. Try to sit close to the bus driver on the school bus. Try to stay close to the teacher in gym or at recess. When that all failed, it was ass kicking time. No, I wasn't doing any kicking, I wasn't that lucky. It seemed like my very existence pissed off the sighted kids. They made it abundantly clear that I was not OK with them, and when I'd arrive home with a bloody nose or swollen eye, my father would say, "if you let those kids beat you up again, I'll beat your ass too.". Well, obviously, I started to be very afraid of school and of home as well. I tried to fake illnesses as much as possible so I could go to the nurses office and lie down. I used to vomit on the bus from nervousness at least once or twice a week. The kids on the bus would prick me with pins or pull my hair or just punch me or spit on me. Our bus went through the "housing projects" and those kids referred to me as, "dead eye". Sometimes, they would get me down on the floor of the isle and step on my back while kicking me. I don't usually talk about this stuff because it leaves people not knowing what to say. There is nothing to be said. It does, however, explain some of why I became such a rough person when I grew up. I was always small for my age which didn't help things at all. Once I began to grow, I had a permanent chip on my shoulder. I carried my buck-knife everywhere and loved to get drunk and look for fights. I was a completely different person back then. I remember once slamming a guy's head into a wall for talking to my girlfriend.

Eventually, I came to the realization that all of that being tough and mean could just isolate me from the entire world and actually continue the misery I had become used to, and it was just that, misery. I'll admit it took a couple of years of good therapy and swearing off all alcohol to get myself together. I still deal with some of the "post traumatic stress", to this day. I startle easy and sometimes I have a hard time demanding good treatment from people because I get a bit concerned that I'll lose it and overreact. Getting to a point where I can appropriately react to all situations hasn't come for me completely yet. I'll still curse someone on the street when they poke fun at my cane or at me running into something. I have learned, however, that anger, especially in men, is really, a cover for the hurt feelings that we don't want to show.

Now days, I find that I can usually think through a situation and react more reasonably than before. For example, one day, last year, I was walking into a room at work. It is a room which was built as a break room for my vending machines but instead of having a table and chairs, they moved a copying machine in there. Well, there was this repair guy in the room, working on the copier, only I didn't know it. I walked in the room and my cane didn't hit anything it slipped just past the open metal side of the copier and I hit it with my leg and stomach. The repair guy and another guy just said, "look out". "we're working on the copier.". I informed them that I couldn't "look out", and lifted my cane up and pointed to it. After I serviced my machine and left, I stopped outside the room to straighten the boxes on my cart and this is what I heard; "Hey, did you see that dumb ass run into the door?". And the reply, "yeah, what a moron." followed by side-splitting laughter. That's the kind of thing I'm talking about. I just keep trying to develop a thicker skin and it's working little by little but it doesn't mean it doesn't make me feel alienated some days or that I don't still hurt inside over it. I went in the room that day to say something harsh and vulgar but all I could say was, "what's wrong with you people?", "how is making fun of my disability funny?". Believe me, I thought of much worse things to say. I wanted to hurt them but left before I lost my grip. So, I guess I'd say that my childhood experiences started me down the path of major problems, like addictive behavior and violence mixed with depression, but I've learned that the acceptance of even just a few good friends can take away the isolated feelings, and learning that my experiences weren't mine, alone, makes me feel like part of a team of people like on this list. People working things out and helping each other to find answers to questions or new ways to tackle some accessibility problem. I've also learned that nothing in the world feels as good as being able to be of help to another person. It is my drug of choice these days.

Thanks for letting me vent a bit and share some negative things from the past that I felt never got a chance to be said before. I feel that I can cope with going blind. I don't have to like it but I'm not scared of it any longer. I agree with Lynette that we are very lucky to live in this time of technology which has the potential to bridge so many gaps. Please, remember her story and mine the next time you face your blindness and know that you aren't alone at all. We're out here going through it with you, and we get it. Sorry if I seem over-the-top but Lynette's recording really touched me. I laughed and I also said "exactly!", and "I know what you mean", a lot while listening. Excellent job Lynette.


Jeff



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